Ch-ch-ch-changes

I've fallen off the blogging wagon yet again, and seem to have just been focusing on race recaps.  There have been some changes in my family that are pretty significant, and I want to focus on that right now.

School started a little over a month ago---and this time, we're in two new schools!

D is now in 6th grade, which is middle school here.  How I have a child old enough to be in middle school is truly beyond my comprehension.  He's 11!  I remember his first day of kindergarten so clearly-----and now he's out of elementary school and in middle school.  I am continuing to try to soak it all up---it goes so fast. I only have 7 more years left with him at home.  I can cry just thinking of that.

He's made a great adjustment to middle school.  His school is on a block system, which means that he only has 3 classes a day.  They alternate days---one day he has Language Arts, Science and P.E., and the next he has Social Studies, Math and Band.  Because there are only 3 classes a day (plus a homeroom that is the only daily class), each class is 90 minutes, giving them time to really dig into a subject.  But not only is he on a block system, it's a ROTATING block.  So Monday he will have periods 1-3-5.  Tuesday will be 2-4-6.  Then Wednesday it's 3-5-1, Thursday it's 4-6-2, Friday it's 5-1-3, and Monday it's 6-2-4. It sounds confusing, but the kids understand it within a few days.  I actually like it. It means that EVERYONE has every period at each time of the day at some point.  Every child will have math first thing in the morning, when their minds are fresh, and every child will have math after lunch, when they are more sleepy.  Every child will have P.E. first thing in the morning, when it's cooler, and every child will have P.E. after lunch, when it's hot. It's a great equalizer!  And, since there are only 3 classes a day (and really, only 2 academic classes a day) he doesn't have TONS of homework each day. Although, he really does still have a lot.

This year he is in GATE (Gifted and Talented).  He tested into the GATE program in 4th grade, but there really is no program in elementary school, with the budget cuts.  Here, GATE comes into play in middle school. The GATE classes are Language Arts and Social Studies.  He had a choice to be either in homogeneous class (all GATE students) or heterogeneous class (half GATE, half high-achieving but not GATE identified). He wanted homogeneous, and had to enter a lottery for it---and got it. I warned him that he would not be the smartest kid in the class anymore in this type of class, which could be good for him---and he's ok with that.  His math class is the highest there is too (there is no official GATE class for math, but they place kids in math based on their MAP scores).  He's in a compacted 6/7 class, meaning that he's getting a year and a half of math in one year.  Halfway through the year he'll get the 7th grade book.  This also means that he's past the point of me helping him in math.  Luckily, if he needs help, my husband, J, is a math whiz (his dream is to get his masters degree in math). I am great at Language Arts, writing, etc, so between the two of us we have him covered.

He also switched instruments this year. In 5th grade band, he learned the saxophone.  This year he wanted a change, and opted to play the baritone. (Click here to see what this is. I'd never heard of it until this year). He has to practice this most days, in addition to his homework, and also in addition to his guitar (he's been taking guitar lessons since 3rd grade). He has joined the astronomy club (meets once a month after school) and has made a few new friends, although he largely seems to be hanging out with his friends from his old school.  He had a rough start to the year with a few instances of irresponsibility, but now we have a plan that he follows to make sure all homework is done, paperwork is signed, etc.  I'm incredibly proud of him.

On the other hand, my daughter, A, is also in a new school.  She's now 9, and in 3rd grade.  We made the very difficult decision to place her in a special day class. She's been in general ed this whole time.  She's been doing ok, but not great, and between some behavioral problems she's exhibiting and the fact that she needs more one-on-one with reading comprehension, a smaller class was the way to go.  A general ed class has up to 28 kids (and up to 34 in 4th and 5th grade!) and not only does the teacher not have a lot of time for one-on-one attention, but it's very noisy, which is difficult for a deaf/hard-of-hearing kid.  This new class only has 11 kids (it will have no more than 14), and has two teachers.  It's a NSH class (non-severely handicapped) and the only special ed class-type in my district that is is on the academic track.  (We had to switch schools because at our old elementary school, the special day classes were autism classes)  Kids here are geared for a high school diploma, while other special ed classes are geared to a high school certificate.  In fact, their goal is to get the kids out of hte NSH class at some point and mainstream them back into general ed. That is my hope for A.  But, if she needs this class for the duration, then we'll do what we need to do.

She is getting lots of one-on-one.  Actually, she's in the highest reading and math groups, and for at least one of those groups she's the only one in it! I was nervous putting her in this class, but I'm thrilled so far at what I'm seeing her accomplish.  It was hard to admit that she needed more, that she needed special ed, but she does.  I'm proud of her, and frankly, I'm proud of myself and my husband, for recognizing this and placing her where she belongs.  She does miss her old school, and sometimes cries that she wants to go back, but for the most part she loves her new school and teacher.  It's good that we still have Brownies twice a month, because that's where the majority of here friends are and she can still see them. But she's made a few new friends at the new school as well, so that's good.

In short, both kid are where they need to be. Both kids have special needs of sorts, and I've placed them in classes that address that.  GATE or Special Day, each class is geared to my son and daughter, respectively.  I'm hoping that what I'm seeing during this first month continues all year!

We're A Golfing Family Now

Back in February, my family was having dinner one night and J and were talking about sports.  We were discussing how our son, D, doesn't like participating in team sports.  We've tried soccer, basketball, baseball, etc....but he just hates them. Instead, he prefers individual based sports, like karate (he's about to test for his brown belt---black is the only color left to earn after this!) and running (just like his mama).  He's also very interested in archery.  But that night at dinner, the subject of golf came up---a sport that's individual, but yet social at the same time.

J started wondering if golf would be a good sport for our daughter, too.  She hasn't ever played a sport before, as her balance and vision issues would get in the way.  She did gymnastics for a while, but after breaking her neck last year she's not allowed to do that anymore.  She also takes adapted swimming lessons, but still can't swim unassisted.  Golf was intriguing to us.

A quick Google search found us a real gem:  a PGA golf pro who specializes in helping children and adults with special needs learn to play. The coach, (whom I'll just call Coach in this blog) was delighted to hear from me and told me a little of his history.  He has been helping people for the past 35 years play!  He works with special needs of every sort---autism, spinal cord injuries, Down Syndrome, etc.  When I told him about A, he said that golf would be the perfect sport for her.  One reason is that she doesn't need to run in golf (A has a hard time running due to her balance).  And the second reason is that the ball won't go anywhere until she walks up and hits it.  Because of her vision issues, I don't want her around flying balls coming toward her (soccer, softball, etc).  So golf did seem perfect.  Coach said to bring her in----but wanted the whole family to come, not just her.


We've been going every Saturday since February, and I can't believe how much fun we're having.  At this point, all four of us have our own set of clubs (J already had his own set, and the kids each got a set for their birthdays earlier this year.  I myself am borrowing a set from a friend).  It's the first family activity that we've ever done---something that ALL FOUR OF US are learning.  We have our lesson, then go out to dinner after.  Very good quality family time.

A is really enjoying it.  Although she hasn't gone on the course yet, she is enjoying being on the putting green, chipping green, and driving range. Because of her vision limitation (bilateral colobomas) she has to work extra hard at seeing the ball before she swings the club.  She truly is getting better and better, and she gets so proud of herself when she hits a ball particularly well, or sinks a ball into the hole on the putting green.

I myself have learned to like it. Until our first lesson, I'd never picked up a club, save for playing miniature golf.  But I'm liking the challenge. I especially enjoy chipping and driving.  The 7-iron feels so good in my hands, and I'm learning proper form and how to get a more aggressive swing.  I love it when the ball goes farrrrrrrrr.........

Best of all, and perhaps most surprising, is my son.  D has become a golf fanatic. He catches on very quickly, and is quite good for someone only playing a few months.  In fact, last weekend he participated in his first golf tournament, in the 10-and-under category.  I'm thrilled, as golf is one of those sports that can be done solo or with a group (much like running).

I've yet to go out on the course, but J and D have. Not only have they gone out with Coach on the rare days that A and I need to miss the lesson, but they have gone golfing on their own a few times at a local 9-hole course.  One day I'm sure I'll get out there. In the meantime, I'm enjoying learning the basics, and watching my kids each learn a new and fun sport.

Annual IEP

I know I've been absent on the blog.  No particular reason...overall things are going well, I"ve just been very busy. I am still training hard for my half-Ironman distance triathlon, which is in September.  We're wrapping up the school year, which is a whirlwind of activity, not only for the kids but for the school Foundation I'm a part of.  We took the kids to Disneyland for a few days, and are getting ready to re-do our kitchen.....really, just life has gotten in the way.

One thing that has happened recently that is getting me down, though, is my daughter's recent IEP.  Last week was her annual review.  It ended up being over 2 days, as one of the therapists couldn't come one day.  So on Monday we met with her Physical Therapist (PT), Occupational Therapist (OT), Speech Therapist (ST), and Adapted P.E. (APE) teacher.  On Tuesday we met with her Deaf/Hard-of-Hearing (DHH) Therapist.  Present both days were her kindergarten teacher, the Speech Therapist, the Resource Specialist (who acts as A's case manager) and the Program Director.

Overall, A is doing very well.  In PT, OT and APE she has met most of her goals and has made progress toward the rest.  In Speech and DHH, however, she making progress but not as much as we'd like.  Her expressive language is still very delayed (a language sample transcript shows her language to be about that of a 3 year old; she'll be 6 next month). All 5 of her therapists wrote tons of goals for her for next year...so many! I  know this a good thing.  If they didn't think she was capable, they wouldn't make so many goals, so set the bar so high.  She'll be pulled out from class a lot next year, even more so than this year.

The question is, where do we place her?  She'll be in kindergarten again; she is in a great 2-year kindergarten program which is for kids born June-November, who would normally be the youngest kids in the class.  This gives young kids an extra year of growth. So next year is Year 2 of kindergarten, this time at our home school (our home school doesn't have this 1st year of kindergarten, so she's at another school in our district).  Academically, A is right on target (reading, writing, counting) and does not qualify for Special Day Class.  What she NEEDS is a DHH class, a small class just geared toward deaf/hard-of-hearing kids.  But my school district does not have such a class.

We CAN think about putting her elsewhere. A school district near us has a DHH class that mainstreams for some activities. And, even farther away there is a private DHH school, with only DHH kids.  This intrigues me a lot.  Our DHH therapist said that most kids only go to that school for a year or two, then transfer back to their home school.  Most kids' language is greatly enhanced by going there.

In the end, we decided to try A at our regular home school in the fall.  I want to see how she does this summer and receiving school services again.  In the fall, October or November, I will call an emergency IEP and meet with all the therapists.  If she is making progress, we will keep her where she is.  If not, I will start the fight for the district to move her to one of the DHH schools as soon as possible.  Six months is a long time, and I want to see what more we can do for her at home and at school. (I already have her in a language pragmatics/social skills group that I pay for privately once a week; she'll continue over the summer. I'm also looking into another such group, and maybe 1:1 speech therapy. I am also calling the DHH school this week to see if there is a summer program that we can enroll in).

The hard part is knowing if we're doing what's best for her.  I want her language to improve. It IS improving. I also don't WANT her to be segregated with just DHH kids, but I will if that's what best for her, especially if it's only for a year or two. I guess time will tell.  The good news is that no decision is irreversible, and we can put her in a DHH class or a general ed class at any time.  The bad news?  Parenting is hard. Making these decisions is awful.

Parent-Teacher Conference Woes

I haven't written an update on my daughter, A, in some time. This is not because she isn't doing well; actually, to the contrary, she is doing great. I haven't written about her recently because I am harboring some anxiety about her, and to write about it would mean actually having to deal with the issues in my mind. However, I am finally ready to write it all out.

As I wrote a few months ago, she is doing well in kindergarten. A is in the first of a two-year kindergarten program; this program is geared toward typically-developing children, who were born June through November. Ordinarily, these kids would be the youngest in their classes. The district recognizes that young kids may need an extra year of growth (social, emotional, etc) and offers this two-year program as an option for parents. You don't HAVE to enroll your child in the program if they're born June-November; you can go right ahead and put them in the regular one-year kindergarten class. For me, however, enrolling A was a no-brainer. I knew she needed this extra year, and am grateful she qualified based on her birthday (otherwise I would have had to fight to enroll her).

Last month her report card came out and we had her parent-teacher conference. The report card made me happy; the conference did not.

Let me explain.

Her report card showed her pretty much right where she should be. Academically, she is excelling, and is even above "grade level" in some areas (I put "grade level" in quotations, as there really is no grade level for the first year in a two-year kindergarten.) She is reading, and knows all of the sight words she's been taught. She's a pro at reading 3-letter words, and at home is almost done reading the Level One books of the Hooked on Phonics series to me. She is at "grade level" with math and most other things too. It was noted that she was behind on language, but that wasn't anything I didn't expect.

Her teacher, during the conference, expressed some concerns about A for next year. She said that while she is excelling academically, she worries about her with social and language issues, especially with language pragmatics, which essentially is using language in a social context. At home, she not too bad with it, but at school she is very quiet. She is very well-liked and has a lot of friends in the class (one girl even gave her a Best Friends Forever necklace last week) but I'm not sure how well she is relating to the kids. The teacher reported that the kids treat her "like a doll". For example, A will be playing with blocks and another child will say, "A, come play dolls with me." A will go and play...but when the teacher would ask is she had wanted to play dolls, she said no. She is not speaking up for herself in social situations, or having full conversations. Again, this is odd, because at home she talks in full sentences all the time.

The teacher thinks that A has the most problems during free play, when the classroom is very noisy. With her hearing aides, she may not be able to tune out the ambient noise. There are 26 kids in the room, and trust me, it gets noisy (I'm in there every Thursday to volunteer). During instruction time, when the class is quiet, she is doing well. She suggested that next year A spend some time in a special day class, for part of each day, in order to give her some quieter time.

Well, this doesn't sit well with me at all. I'm not opposed to a special day class if there was one that is appropriate for her...but in my district, there isn't one. The highest level of special ed class, the non-severely handicapped class, is way below her level. I observed it this past May, and watched as kindergarteners were being called up to the board to point out letters. If I put A in this class, this is where she's be expected to be A YEAR FROM MAY...pointing out letters of the alphabet. The child is already reading! Yes, the class was small and quiet, but I can't put her in an academic environment where she'd wither.

I've been considering other options, such as private school. However, from what I'm hearing from talking to others, private schools aren't always the answer. They often have large class sizes (as the schools want the money) and they aren't necessarily equipped to handle special needs. There is a deaf/hard-of-hearing school, but I'm not sure I want to segregate her. Besides, she is doing well right now where she is.

I called an IEP (the first one I've called---all my others have been her scheduled, annual reviews). The people there (her teachers and all her therapists) were convinced that they could meet her needs in the school district. We added another half-hour of speech therapy, with even more focus on social skills. We also added another occupational therapy goal of coloring, and the OT may be adding a goal of sensory processing. They talked about other things to do in the classroom to help her (put a stool under her feet, etc). They, too, nixed the idea of a special day class---she needs to be in the least restrictive educational environment, and she's too bright for the level of classes they have, at least at this time. I left the IEP feeling really good about what we're putting into place.

Additionally, I have found a local private clinic that has a social skills class, focusing on the language pragmatics! A has already been 3 times. I love that we're doing something extra, outside of school, to help her. And even at home, I'm prompting her more to use complete sentences rather than one-word demands (i.e. saying "I want some water, please" instead of "WATER!").

My plan is to enroll her at our home school next year for kindergarten (she's at a different elementary school right now, as our home school doesn't have the two-year class). We'll see how she does. If I have concerns, I'll raise them. If I find it's not the best fit for her, I'll look into other schooling options. I want to do what's best for her, and time and money are not the issues. It's finding the place where she's going to thrive. Nothing has to be set in stone; no placement is unchangeable. I'd hate to have to move her in the middle of a school year, but if I'm not happy next year, I'll do it.

I'm convinced that this little girl has what it takes to thrive. It's my job to ensure that she has every opportunity to do so.

Gratitude

When you have a child with a long history of medical issues, you learn to be grateful for things you wouldn't ordinarily think about. Eating? I'm grateful....my daughter, A, didn't eat for years and used a feeding tube until she was 3 years old. Walking? I'm grateful...my daughter didn't walk until she was 3 1/2. And today I'm grateful for a sprained ankle.

Yesterday afternoon I got a phone call from my daughter's deaf/hard-of-hearing therapist. She was really concerned about A. She observed her at school to be off-balance (even more so than usual), seemingly unsure of where to step when she walked, and was not writing her name correctly, with the letters in the right order. As she relayed all this to me, I grew more and more concerned; I, too, had noticed yesterday morning that she wasn't walking quite right, but chalked it up to her possibly being tired. And when I volunteered in her classroom yesterday, I witnessed her not writing her name correctly, too.

The therapist was concerned that A had possibly suffered a concussion. This was not a far-fetched theory; she had been pushed down by a little boy on Monday, 4 days earlier, and in fact had a cut and gooseegg on her forehead. (This same little boy has been pushing her a lot recently. It's not aggressive; rather, he has a crush on her and keeps running over to hug her. But she has balance issues and keeps getting pushed over. It's gotten to the point where the principal is involved, and the little boy is being put in a different recess than A). The therapist also suggested that maybe A had had a seizure in her sleep; this frightened me, as A has never had a seizure before.

Needless to say, hung up and had A walk over to me. She was indeed walking funny, something I hadn't noticed earlier because she hadn't been walking far. I had her write her name a few times, and each time she got it right. I was not concerned about this now, but I was concerned about the walking issue. I called our pediatrician, who told us to go straight to the emergency room at Children's Hospital.

The whole drive there I was freaking out. What if A had suffered a concussion? What could they do about it at that point? And what if it was a seizure? I know this is a large leap to make, but given her medical history, and the fact that she had a bilateral pre-natal stroke, it wouldn't be unheard of. On the other hand, I was able to talk myself down from the ledge; her writing was ok, and over the past few days she had exhibited no unusual behavior (aside from the odd walking)...her eating, sleeping, and personality was unchanged.

The doctors at Children's Hospital did not think it was a concussion, based on observation and examination. However, when they looked at her legs, they noticed one ankle was swollen! She ended up having some x-rays done on her ankle, which luckily turned out normal. Most likely she sprained or strained her ankle, which would of course account for her walking oddly! One thing that worries me is the fact that she didn't tell me she was in pain! Never in the past week did she indicate, either verbally or non-verbally, that her ankle hurt. She is definitely a little trooper, but I wish she would be less so sometimes.

So, I am grateful. A sprain/strain? That is easily healed. We are keeping her off her feet as much as possible; of course she's walking some, but she is sitting out of adapted P.E. and is playing in the sandbox at recess. And at home, of course, I'm carrying her around like a princess as much as I can. In light of what I thought it COULD be, this is nothing. A concussion? A seizure? A broken ankle? Bring THIS on. We can deal.

Hooray for Kindergarten!

I just realized I haven't written anything about how my daughter is doing in kindergarten! Usually my blog is half about my family and half about racing; however, these past 6 weeks or so I've been so focused on my races. In the past few weeks, I've completed two triathlons (a sprint and an Olympic distance) and a half marathon and I've completely neglected to write about the part of Grateful Mama's life that makes me a Mama!

My daughter, A, started kindergarten at the end of August. As I wrote on her first day of school, she is in the first of a two-year kindergarten. My school district offers this two-year kindergarten to children who were born in June through November, who would otherwise be the youngest kids in the class. This is not a special ed class; it's 100% mainstream, with all typically-developing kids. Most of the kids in there, including my daughter, can benefit from the extra year in order to develop more social, language and other developmental skills. Although she is in a mainstream class, she does get pulled out for 5 different therapies during the week (30 minutes of physical therapy, 30 minutes of speech therapy, 30 minutes of occupational therapy, 60 minutes of deaf/hard-of-hearing therapy, and 60 minutes of adapted P.E.). I'm so happy that they are giving her all of her services even without being in a special ed class.

School has now been in session for seven weeks. My son, D, is doing great in second grade, as I expected. But my daughter? She's thriving!

• Academically she is exploding. She went to school being able to read a few 3-letter word here or there. Today she can read most 3-letter words without help. She can even spell! We have lots of magnetic letters on our refrigerator that she loves to play with. I can ask her to spell a 3-letter word, like "hat" or "fox" or "bed" and 9/10 times she gets the correct letters and spells the word! Today she came home from school being able to read the words "the", "my" and "see". Being as she is only 7 weeks into her first year of kindergarten, I am very hopeful that she will be a good reader one day.
• On the potty training front, she is mostly trained. I wrote in mid-July that she wasn't potty trained at all. Soon after that, she started to get it. Now, she is accident-free most days, although there are a few days here and there that she comes home from school in new shorts and underwear (I keep a backpack of extra clothes for her in the health aide's office). She also sometimes has accidents at home. But I know many kids in kindergarten have accidents at school, so I'm not worried; I mean, she only trained two months ago!
  
• She has friends! She seems to be well-liked in the class (as she always was in preschool, too) and has a little group of friends. I've even heard kids say "Oh, there's A, let's go play with her" while we're on the playground in the morning before the bell rings. My heart melts each time I see her walking hand-in-hand with a friend. Of course, her language seems to be way below that of most (but not all) of her peers, but she's obviously able to keep up with them.
• She is getting a bit better with writing some letters and using scissors. This will be an ongoing struggle for her, particularly with her vision issues.
• She is getting so independent! She's been wanting to pick out her own clothes and get dressed by herself; help set the table; help unload the dishwasher; and assist me with various other household chores.

All in all, I have seen HUGE progress over the last few months with A. Of course, her whole life has been one big leap of progress, but I'm seeing more and more subtle, yet important, milestones these days. I couldn't be prouder.

Smiling Under My Tears

Today was the first day of school! D started second grade, and A began kindergarten. I have been somewhat dreading this day, as I have truly enjoyed having the kids at home this summer. Save for a few days here and there where I almost pulled my hair out in frustration or boredom, we really had a good time. It was nice to have relaxed mornings, not have to worry about schlepping off to yet another therapy appointment, and recharge after a jam-packed school year. And I have been trying to savor each day with my kids, getting all the kisses and snuggles I could get.

Dropping D off at his second grade was a breeze. A few years ago, when he started kindergarten, I cried as I left him. I was sad that he was growing up so fast, that time was flying by, that he was in elementary school. But last year, and now this year, I'm just so proud of the young man he is becoming that it's a pleasure to drop him off. When I picked him up he was happy and said he had a great day. Whew!

My daughter, however, was a different story. She is now in kindergarten. Actually, she is in the first year of a tw0-year kindergarten. I am fortunate that that I live in a school district that offers this. It's a special program for kids who are born June-November, who would otherwise be the youngest kids in their class. For example, if a child is born in October, and started kindergarten, they wouldn't turn 5 until October, and would be in a class with kids who are almost turning 6! This is a great program, and is perfect for kids who need that extra year of social and emotional growth. Since A's birthday is in June, she qualified, which was a relief because I didn't think she was ready for "real" kindergarten yet with all of her delays. So, she'll be at this program for the year, then transfer to our home school next year for her second year of kindergarten (not every school in the district offers this class; our home school is one that doesn't, so she's now at a school different than our home school.)

In contrast to my feelings of sadness when D went to kindergarten two years ago, I was feeling excited for her. Most of my friends whose youngest kids are now in kindergarten were sad, but I was too proud of her to be sad. You see, today was a dream come true for me. Five years ago, when A was in the NICU struggling for her life, this was nothing but a pipe dream. As the years went on, and she had delay after delay after delay, I would hardly dare to hope that one day she would overcome all that she has.

Last spring, when we had her IEP and she tested into a regular, mainstream kindergarten class, I felt like my prayers had been answered. Yes, she will still be receiving all of her services (speech therapy, physical therapy, occupational therapy, adapted physical education and deaf/hard-of-hearing therapy) but she is in a regular, non-special ed class. It's all I ever wanted for her.

My biggest challenge this summer has been potty training. Last month I wrote that at age 5, A was still not trained (which is not unusual for kids with issues similar to hers). I'm proud to write that, only a month later, she is now trained! She still has a few accidents here and there, of course, but she is trained. Because of her balance issues, she has trouble getting on and off the toilet by herself, so I put her on at home. Yesterday, we were able to go in to her classroom and let A practice going on the potty all by herself. Luckily, the toilet there is so low that she had no trouble getting on it.

When I dropped her off today, I was in tears as I left. Not because I was sad...but because I was so proud. She's come so far. WE'VE come so far. She walked right in the classroom and didn't look back. When I peeked in the window, she was already sitting on the rug with the other kids. That's when I lost it and burst into tears: because she was one of the kids. I can't explain it in words, but anyone who has ever had a child with special needs will know exactly what I'm trying to say.

I am proud to write that when I picked her up from school, she was still in the same clothes I had sent her in. She had no potty accidents, and told me that she went to the bathroom there twice. I expect an accident here and there, of course, but now I KNOW she can do it! She loved school, and can't wait to go back tomorrow.

Here's hoping for a smooth school year for both my children!

7 Links

There has been something called 7 Links circulating around the blogosphere. I was honored when Thesesa over at Active Eggplant nominated me to do it. It's a great way to dig up old posts, especially for newer and casual readers. So, without further ado, here are my 7 links:

1) My Most Beautiful Post

This is hard! I'd have to say it's one of these two: Thoughts on Mothering My Daughter and Thoughts on Mothering My Son. I wrote both last Mother's Day, 2010, and to me sums what what I have learned from parenting each of my children, including my daughter who has some special medical needs.

2) My Most Popular Post

My most popular post, based on page views, (apart from when I did my Tommie Copper Compression Sleeve Review and Giveaway) was I Miss My Daughter: ICU Update. Last month my daughter was unexpectedly in the ICU for a week, including over her 5th birthday, when her lung collapsed after a supposedly simple surgery to close the hole where her trachestomy had been. Lots and lots of people read that post. It was hard to write..and after re-reading it now, I'm extra glad she is home.


3) My Most Controversial Post

I don't think I have ANY controversial posts! I will post this one, I Feel Like A Running Fraud, because that was an INNER controversy with myself. I didn't feel like a real runner, or a real triathlete, even though in actuality I am.


4) My Most Helpful Post

I will nominate What is YOUR Excuse?, in which I counter-attack all possible excuses for not making time to exercise! I firmly believe that we can ALL carve out time to work out. If I can do it, anyone can!


5) A Post Whose Success Surprised Me

I wrote about a necklace I had engraved with the phrase I Am Not Afraid. I Was Born To Do This! My friend and jeweler Erica Sara made it for me. It expressed my thoughts on overcoming my fears, both when it comes to racing half marathons and triathlons and in parenting.


6) A Post I Feel Didn't Get The Attention It Deserved

Oh, heck, I don't know! I honestly don't pay attention to the number of people who view my blog or each post. I also don't keep track of comments, as some people comment on my blog, others write their responses to posts on Twitter and dailymile, and many more people read but don't respond at all. I will, instead, randomly choose one that didn't get a lot of comments: My Sweet Potato Moment, where I explain why I am grateful for all the little "ordinary" things my daughter does...including getting food stains on her clothes.


7) A Post That I Am Most Proud Of

Easily this post is The Swim. I was proud of the way I wrote; I thought it encapsulated a swim session from beginning to end perfectly.

And now I'm supposed to nominate 5 people of my own to do this exercise. I'm not sure if these friends have done their 7 links yet, but if not, I encourage them to do so!

Steena at Finding My Happy Pace
Jacqi at Bloggin 'N Joggin
Jenn at My Little Rays of Sunshine
Jenn at Junk Miles
LB at My Reason To Tri

Therapy-Free!

For the first time in her (almost five years of) life, my daughter, A, has no therapy appointments.

I am used to running around all over town to take her to various appointments. She's been in therapy of one kind or another practically since she was born. Her first physical therapy (PT) session was when she was about a week old, while she was in the NICU! Throughout her 12 week stay in the NICU she received both PT and OT (occupational therapy) services. Speech therapy was added when she was only 11 months old. So, for about 4 years, we had 3 separate weekly therapy sessions at Children's Hospital. (OT ended when she was three, as we had it only for feeding purposes. Once she was eating and drinking orally, and on her way to getting her g-tube out, OT ended. We re-started again for a few sessions at the end of last year to work on her writing skills.)

Once A turned 3, she started services with our local school district. So, in addition to getting all of her private sessions at Children's Hospital through our insurance, we also added speech therapy, PT and adapted physical education (APE). This past year, when she turned 4, the school district added OT and deaf/hard-of-hearing therapy. Yes, I was busy. Between all of her appointments through the hospital and at school, we were rarely home!

Once 2011 hit, our schedule eased. We got discharged first from PT at the hospital, and then from speech therapy. Both therapists said that she had met her goals, and, while she had a lot of work yet to do, her school-based therapies would continue to help her. I was thrilled not to have to make as many trips down to Children's! We continued, however, to get her school-based services 4 days a week...and NONE of the therapies were at our home school. We had to drive a distance for each one.

Now that the school year is practically over, all of her therapies ended last week. Because she is not doing summer school, no therapy is available to her over the summer. Last week we said tearful goodbyes to her OT, PT, DHH, APE and speech therapists, most of whom we may not be seeing again, all of whom did incredible work with her. All of her therapies will resume in August when school starts again, per her IEP, but for the next few months we have nothing.

Nothing!

Whatever shall we do to fill the time? I know I have work to do with her at home, both with her language and her fine/gross motor skills. But I am amazed that we have WEEKS of no therapy for the first time....EVER!

Pre-Kindergarten IEP

Today was A's annual IEP (individualized education program). This time it was a triennial IEP, with her transitioning to kindergarten next year, so a huge battery of tests had been administered over the past few weeks. This was our third IEP with her, and both had gone very well. I was overall pleased with their recommendations last year, except for the fact that they had recommended a Special Day Class, mainly to contain all of her services to one site. Having nixed that, I kept A in her inclusion preschool all year. Seeing all the testing results, I am 100% sure that was the right choice.

Why? Because all of her testing (except for gross motor skills, which we knew would be below average) shows her at the average level.

Let me back up. There were a million people present at the meeting today: the program director, school psychologist, psychologist intern, occupational therapist, physical therapist, vision therapist, deaf/hard-of-hearing therapist, speech therapist, resource specialist, two of her preschool teachers, my husband and myself. Her adapted P.E. therapist and the district nurse were unable to attend, but they had sent their reports.

Most of the people in the room had done testing on A....and as I said, everything puts her in the average range. Academically, she scored in the average range (on two separate tests!) in writing, reading and math! I couldn't believe it....her writing is average! This is the same girl who could barely draw a circle last summer. Now she is writing most of her letters. Her language is in the average range. Her IQ is average! Average is my new favorite word!

Of course, A still has a long way to go. Her gross motor skills are very behind, and she still needs a lot of work on language pragmatics (that is, talking in socialized settings, having conversations, etc). The language is IN her, we just need to help her get it out. But I know that she will get to where we want her to be. Everyone present at the IEP, without exception, talked glowingly about my daughter, about how self-motivated she is and how she continues to make progress without plateau.

Because all of her testing was average, for the first time in our IEP history the words Special Day Class wasn't even brought up! She doesn't need it! She will go to regular, general ed kindergarten next year. Luckily, our school district offers an amazing two-year kindergarten for kids born June-November, who would otherwise be the youngest kids in the class, to give them an extra year of kindergarten, an extra year of growth. This is what I am going to enroll A in....to give her the gift of an extra year. She needs an extra year of growth, both physically and language-wise. Plus, it gives her an extra year at home when it's time for her to graduate high school. Her first year of life was spent in the hospital and doctor's appointments, so we get to make up that year during her teens.

So, she will go to a half-day kindergarten next year, then transition to a full-day kindergarten the following year. These are the therapies she will receive:

30 minutes, once a week, of speech therapy
30 minutes, twice a week, of deaf/hard-of-hearing therapy
30 minutes, once a week, of occupational therapy
30 minutes, once a week, of physical therapy
30 minutes, twice a week, of adapted P.E.

Some of her therapies will be pull-out (meaning they will take her out of the classroom for 1:1 time) and some of her therapies will be push-in (meaning the therapist will work with her in the classroom, which will be great for things like speech). She does not qualify for vision therapy or resource class (although she never has qualified for either of these!) Her qualifying diagnosis will remain "other health issues" as she has so many medical issues, with deaf/hard-of-hearing as a secondary diagnosis.

Another thing I was pleased with is that she qualifies for an FM system, which is a system that will have the teacher wear a microphone around her neck and the sound will transmit directly into her hearing aid. This will be great for her hearing, especially since she'll be in a noisy class with up to 25 other kids.

All in all, I am very pleased. I am beaming as I write this. My daughter is a miracle...and I can't wait to see her thrive next year in elementary school!

Helping Her Vision

Today we had a follow-up visit with A's opthomologist. I was eager to see her, as we had two things to discuss. First, there was the reason we had the visit scheduled in the first place: to do a vision test on A's left eye. Our last visit in December showed that A's eye may not be as in bad shape as we had thought it was, and the doctor wanted to do an undilated vision test. Second, I wanted to discuss A's recent falls and how I thought they were directly related to A's new prescription glasses for astigmatism.

The first thing the doctor did was test A's left eye. With her right eye covered, she was able to see letters on a chart at 20/300, possibly at 20/250. Our last visit she tested at 20/200. However, as the letters got smaller A got bored and was done...so it's hard to tell if that is where her vision really is, or if she could see better. Regardless, even a 20/300 is more than we'd previously thought. It's still technically "legally blind", but that's just a term. What that means for my daughter is that her left eye is providing a lot more peripheral vision, and possibly central vision, than we'd thought, and helping her depth perception. Great news!

Next, we discussed the glasses. The doctor agreed that perhaps A wasn't ready for the prescription, and is sending her new glasses back to be have clear, non-prescription lenses put in. She had never heard of a child falling on her forehead due to this prescription before, but she agreed that it seemed the glasses were the culprit. (Of course, I'm sure not many of her patients are also missing their semi-circular canals and have impaired balance to begin with). Easy, peasy.

We then got in to discussing A's options. As A is only 4 1/2, and still technically "plastic" (the doctor's words) with her vision, she would like to try to improve A's eyesight as much as possible. To that end, she is suggesting two things:

1) She wants us to start patching A's "good" eye (her right eye) daily. This will cause A to only use her left eye, thereby strengthening it. Even patching for a few minutes a day will help, although up to a few hours would be optimal. In reality, I think we might be lucky to get an hour in a day. The doctor recommends that A not be walking around while patched (as her depth perception will be severely impacted and she might fall again) and so we have to do it while sitting down. But any time with the patch on will help, the doctor says.

2) The doctor is recommending surgery for A's ambyopia (lazy eye). Her left eye tends to wander at times, although it wanders far less now than it did when she was younger. She thinks that having her left eye always looking central will also help to strengthen the vision in that eye. Also, although it's a much lesser, secondary reason to do surgery, it's cosmetic. The good news is that if we decide to go ahead with the surgery, she can schedule it for the same time that A is having surgery to get her stoma from her tracheostomy closed (she says she schedules with our ENT all the time) so A would only have to be put under anesthesia once.

I'm at a loss as to what to decide about the surgery. I'm sure J and I will have lots of discussions about it. I know it's a common surgery, but it scares me. My own mother had the surgery; our doctor has done hundreds, if not thousands of them. But I just need to make sure it's the right choice for A.

All in all, it was a good visit. We already had our patching session for today; she was reticent at first, but it helped that both D and I put our own patches on. Hopefully we can get this resolved, as I would love to help A maintain and even improve whatever vision she has.

Falls, Blood, Stitches--and Answers?

Yesterday was a very hard day.

I haven't blogged about this, but recently my daughter, A, has been falling. A lot. Flat on her face, right onto her forehead. In fact, she has had 4 falls all within the past 10 days or so.

The first fall was about a week and a half ago. We were outside playing with the neighbors, and she was walking on the sidewalk. All of a sudden she was flat on her face. While there was no blood, she had a HUGE black-and-blue goose egg in the midde of her forehead. I iced the knot down as best I could, and as she seemed ok, didn't think much else about it.

Four days later we were at the supermarket. I grabbed a shopping cart and turned to throw away the trash that was in the cart. In the 5 seconds I was turned, A managed to fall again---right on her forehead. There was a tiny bit of blood, just enough to put a band-aid on. My worry started to grow---why was she falling?

Four days after that, a huge accident happened. It was time to take D to karate. We went into the garage, and the kids got into my minivan (as they do all the time). My back was turned, as I was locking up the door from the garage into the house, when all of a sudden I heard a sickening thud. A had fallen from my minivan, facedown onto the concrete garage floor. I picked her up, and there was blood EVERYWHERE. I saw a huge, deep gash in her forehead, right where the goose egg had been. I left D with a neighbor (J was in Green Bay on business, so I was on my own) and spent 4 1/2 hours at Children's Hospital Emergency Room. A left that night with 6 stitches. They warned me to be extra careful with her---more falls could potentially cause brain damage (as any head injury could).

Well, yesterday, three days after getting stitches, A had yet ANOTHER accident. As it was a holiday, J had the day off, and we decided to go to a museum in Balboa Park. We were standing together trying to figure out what exhibit to go to next when BAM, A tripped over D's shoe and fell right onto her head on the marble floor. We were RIGHT THERE---there is no way we could have been any closer, yet she still fell. I picked her up, and saw that there was blood gushing from her her stitches. We ran to the car and took her back to Children's Hospital Emergency Room, where we spent the next four hours. Her previous 6 stitches had indeed ripped open, and she got 15 stitches time. They layered the stitches---3 on the bottom layer, 5 on the middle layer, and the rest on top.

Needless to say, J and I were thrown for a loop. Sure, A has balance issues. She always has and always will. She was born without semicircular canals, which are the part of the inner ear which help control balance. There are supposed to be 3 on each side, or 6 total. A has none. So balance has always been a problem for her. This is one of the main reasons why she didn't walk until she was 3 1/2....it's difficult for her.

But although she falls from time to time, it's never on her head. She often starts to fall, but catches herself. Or she'll fall on her tush. This is new for her--falling on her forehead, without even putting her arms out to catch herself. We've been racking our brains trying to figure out what's going on. We've even discussed getting her a helmet.

On the way home from the hospital last night, J came up with what we think is the reason: her new glasses!

Back in December, we had a wonderful visit with A's opthomololgist, where we discovered that A may not be legally blind in her left eye after all. In that same visit, her doctor said that A has a slight astigmatism. She told us that if she were a new patient, she wouldn't even suggest a prescription, but since A already wore glasses (non-prescription, just to protect her eyes) and we needed new glasses anyway that we should get them with a prescription for astigmatism. The timing was perfect, and I was excited to get a prescription that could help my daughter's eyesight.

She got her new glasses on January 5. Her first fall was January 6. And then, of course, she's had three subsequent falls.

Coincidence? I don't think so. She has NEVER in her life fallen on her forehead, and now she falls four times within 10 days, right after getting her glasses?

A cursory look online shows that astigmatism is linked to depth perception, which of course affects balance. I remember a few years ago when I got a prescription in my sunglasses--I normally have no prescription at all, and it took me quite some time to get used to them. I had a hard time walking...was scared to walk off curbs because I didn't know where my feet were and I felt distorted. Having had that personal experience, I know that having a new prescription can affect how depth perception. And A is just a little girl...she doesn't have the awareness or language to tell me that her depth perception is off.

So, starting today, she is back in her old non-prescription glasses. I hope that this ends the falls. We go back to her opthomologist next week for an eye exam to test her left eye, so I will discuss this with the doctor then.

In the meantime, I hope that our hypothesis is right. I am sick to my stomach about all A has gone through---all those painful falls, emergency room visits, and 21 stitches total. I am worried about the scarring she might have. And of course I am scared that the glasses AREN'T the reason she's falling and then we'll be back to square one.

But I'm 99% sure. And those glasses are gone for good.

My Daughter Continues To Amaze

Today I got news about A that blew me away. Not that I should be surprised...my daughter has constantly been amazing me with how she exceeds every expectation, whether it's with her gross motor skills, fine motor skills, or medical issues.

This time, the news was about her speech.

To give some background, A has had a lot of things going against her in terms of her speech. Specifically:

1) She was born with a bilateral cleft lip. While this was repaired at 7 months old (so well, by the way, that you have to look closely to see the scar) she has minimal movement on her upper lip. I think with the scars there her upper lip just isn't as pliable as it should be, which of course affects the production of certain sounds.

2) She is deaf/hard-of-hearing. She didn't get hearing aids until she was 6 months old, so she has always been 6 months behind in her "hearing age". And there may be some sounds that even with the hearing aids in she can't hear very well. Obviously, if you can't hear a sound, you can't reproduce it.

3) She has a paralyzed vocal fold.

4) Up until this past July, she had a tracheostomy, which affected speech production because a lot of air would come out of her stoma. Even though she's been trach-free for 6 months, some of these sounds ("f", "s", and other airy sounds) are just now coming in.

So, clearly, speech has always been an issue for her. We started speech therapy at Children's Hospital when she was only 11 months old. Back then, the goal was to get her to use sign language to communicate, as she was unable to make many sounds at that point. Eventually, she started to sign, and then speak. In fact, most of her signs have dropped now; she is pretty very verbal now, only using sign language once in a while to get her point across. Last year, she started speech therapy through the school district, per her IEP. Between getting two hours a week of school-based speech therapy, and one hour a week of speech therapy at the hospital, she's done a lot of intensive work. The hospital therapist mainly works on articulation, and the school therapist mainly works on language.

This past Monday, our private speech therapist did some testing on her (the Goldman-Fristoe test of articulation). Today she called me with the results:

A's speech sounds are within normal range.

Yes, you read that correctly. My baby, for whom speech has been such an issue, is within normal range for speech articulation!

There are still a lot of sounds she has trouble with, like "s" blends ("sh", "sl", etc). But our therapist said that for a lot of children these sounds don't even come in until age 6 or so. A is only 4 1/2! And she thinks that once A gets her stoma closed, which should be this coming June, even more sounds will improve. So, for all intents and purposes, A's articulation is within normal range, even though she still has work to do.

A's speech therapy is approved with our insurance only through the end of January. Our therapist suggested that we continue to see her for the next few weeks, and then take a voluntary break. We can then have A reassessed in 6 months. If she needs to come back, we'll submit the paperwork with insurance. If she doesn't need to come back, all the better.

I feel ok about this. This is just like her ending the hospital-based physical therapy in December: while she still has work to do with her gross motor skills, she is doing well enough to end, and is still receiving PT through school, plus adapted P.E., horse therapy, and now ballet, tap and gymnastics. She is still DOING physical things. With speech, she will still be getting 2 hours a week of speech therapy through school. And there are language building activities we can do at home. We talk all the time, so this is never-ending.

I cannot believe that A will be done with speech therapy at Children's Hospital! Having done it weekly for the past 3 1/2 years, it doesn't seem real. But discontinuing is bringing us one step ever closer to making her as typical as possible.

My Tap-Dancing Gymnast/Ballerina!

This week my daughter became a gymnast and a tap dancer! For most 4 year old little girls, this would be no big deal; don't most little girls dance and do gymnastics? However, loyal readers of my blog know that my daughter is not "most little girls". After all, she just started walking almost exactly a year ago, at the age of 3 1/2.

I had always dreamed of A dancing, but frankly wasn't sure she ever would. When I was pregnant with A, and found out she was a girl, I imagined us doing Mommy-and-Me ballet like my other friends with daughters did. I fantasized about signing her up for gymanstics....of buying her a little tutu....of going to dance recitals. Of course, when she was hospitalized in the NICU for 12 weeks after she was born, I had a feeling that none of those dreams would become reality. And as she grew older, and her gross motor skills became more and more delayed (she didn't hold her head up until almost 6 months old, she sat up unassisted at 15 months; she finally crawled at about 18 months) it was more and more obvious to me that she may never do the things I so desperately yearned for.

Back in June, I found a dance studio that had a class that seems right for my new walker. I signed A up for a Creative Movement class, which she adored. In July, I put her in the Intro to Ballet class. This was not the Mommy-and-Me class I had wanted, but in a lot of ways it was better: an independent class for 3-4 year olds. I got to go to Capezio and buy her ballet slippers, and outfit her in a leotard and tights. Since July she has gone weekly to ballet (the Creative Movement class ended when school started in September) and has improved so much. She still can't do a lot of what the other kids do, as her balance is impaired and she still lacks the coordination to jump and skip. But she tries her hardest, and loves it. I don't even care what she can and can't do; the fact that she's in the class at all is enough for me.

Flash forward to this month. I had been looking, to no avail, for a gymnastics class for A. It's been hard, much harder than I thought. Every place I called seemed inappropriate. The classes for her age group were developmentally way too advanced, and the classes that were developmentally appropriate were for little kids. However, I hit the jackpot and found a local place that is perfect for her. The instructors actually have experience with kids with needs and varying abilities. I talked to them at length about A, felt comfortable, and signed her up.

This past Tuesday was her first day. She was placed in a class with 5 other kids, all about the same age. They rotated around different parts of the gym: balance beams, a trampoline, slides, rings, etc. The instructor, who had actually read the form I filled out about A and knew her medical issues, stayed with her for all the things she needed extra assistance on (like the balance beams). I was thoroughly impressed with their level of attentiveness. A had a great time and had a smile on her face throughout. And I am satisfied that this will make a great replacement for her medically-based physical therapy, which ended last month after 4 1/2 years. I just know she will benefit from all the activities she will do in gymnastics.

In addition to trying gymnastics for the first time, this week she also got to try out tap dancing! The dance studio started offering it for her age group this week, directly after ballet on Thursday. Most of the little girls in ballet, including A, stayed after the ballet class to test out the new tap class. Again, I think this class will be very good for her. Much of tap dancing involves balancing on one foot, lifting the other, and coordinating when to strike the heel or the toe. Things that are hard for any 4 year old and that are doubly hard for my daughter. But she tried her best, and actually did a heel-toe walk, with the teacher's assistance, across the dance floor!

Today I went back to Capezio buy her a pair of black patent-leather tap shoes. They are now nestled in her ballet bag, next to her pink ballet slippers. Her sweatpants for gymnastics hang in her closet. She has all the gear. My daughter is now a ballerina, tap dancer, and gymnast....just as I dreamed she'd be at age 4 1/2. In my eyes, she's the most graceful one out there.

2010--A Recap For Me And My Daughter

2010 started out as a hellacious year.

A few days into the new year, my beloved grandmother died. She was 90, and was very sick and her death was expected, but it was hard for me. She was my last grandparent, and I had been close to her. Two days after she died, my cousin's 16 year old daughter was tragically killed in a horrible car accident. As much as my grandmother's death upset me, it was her time. For my teenage cousin, it was so horrific that even now, almost a full year later I am tearing up just typing this. The rest of January was a blur----I was sick, the kids were sick, my family was grieving, and I remember desperately wishing that the year would just get over with. It had only been one month into 2010, and I thought things would never get better.

But better they got. In fact, the deaths in my family aside (and I know it's hard to put aside, but I also need to look at the GOOD), this year has the best ever, especially for me and my daughter, A. To recap:

In January, my daughter, A, started walking unassisted at age 3 1/2 . With all of her medical issues, not the least of which was a lack of semicircular canals, which are the part of the inner ear which control balance, it's amazing that she is walking at all. I also began training for a half marathon, the first race of any major distance I'd trained for since 2003.

In March I turned 40....looking and feeling better than I ever have. I also got diagnosed with migraines that month...which was great because I've been suffering from them for years and now with a diagnoses I could get prescription medications that work.

In April A did her first race...a 50 yard toddler trot that even a few months before would have been unimaginable. It was also my son, D's, first race. He did the 1/2 mile run.

In June I got inspired to not only train for a half marathon, but to also start triathlon training. As I was not a swimmer or biker, this was a stretch for me. This started a workout routine for me that had me biking, swimming or running every day. And to this day, I exercise daily, unless I am sick or have some other extenuating circumstances.

In July we got the surprise of our life when not only her feeding tube was removed but also her breathing tube. A had no tubes in her body for the first time since she was 2 days old.

In August I completed my first half marathon since 1999, the America's Finest City Half, and beat my time from 11 years before.

In September I did the Disneyland Half Marathon, again beating my time.

In October I did my first two triathlons: the Mission Bay Triathlon and the Fearless Triathlon (which was a double sprint).

In November A stepped up and down a curb for the first time, thus accomplishing her final goal in physical therapy. Although we will be getting PT services through the school district for some time to come, this ended her medically-based PT services--which she has been getting weekly since she was about 2 weeks old. She also saw her nutritionist for the last time, another specialist she had been seeing since she was born.

Finally, in December, we got news about her vision that blew me away. I had always been told that her left eye was legally blind. Our opthomology visit this month now leads me to think otherwise. I also gave a speech about my miracle baby in front of 800 people.

All of these milestones----medical for my daughter, fitness for me--have made 2010 an amazing year. Add to the milestones that my daughter's speech has blossomed, her writing has improved with occupational therapy, and my own mental health has improved as I have taken more time for myself, and it has been a stellar year.

Freaking Out About The Past

As I mentioned earlier this month, we are in the process of burning our home videos to DVD. My daughter, A, has been loving them. She asks all the time to watch "videos", as she calls them. I think she loves them because they are movies starring people she loves. Most of the videos burned right now are of my son, D, when he was a baby through todderhood. I think she gets a kick out of watching her big brother as a baby.

Today I put on a video of D's third birthday party. A was about 10 months old at the party, a non-crawling infant. Heck, she wasn't barely sitting up unassisted at the party; some footage shows me setting her up in a tripod position on the floor (sitting with her hands out for support). As soon as she saw herself on the video, she started hysterically crying and insisted I turn it off and put a new DVD in.

Why? I think she is scared of images of herself at that age. She was born with a bilateral cleft lip, and she had surgery to correct the cleft at 7 months. At 10 months old, her scars from the surgery were still pretty fresh and raw. Come to think of it, she doesn't like even photographs of herself at this age--or earlier. If she sees a picture of herself with the unrepaired cleft lip she also freaks out.

I understand why the images scare her---although I thought she was gorgeous even with the cleft, a young child would not understand. And she certainly can't comprehend that she is that same baby. She looks totally different now---the scarring is so minimal that you have to look really closely to even tell she had a cleft lip. She doesn't freak about about old pictures of her with the tracheostomy and feeding tube, probably because she got them removed less than 6 months ago and can still remember them in her body. The cleft lip? She has no recall. It must upset her to think that was her.

I will not force her to watch those videos or look at the pictures. I don't want her to be upset. I know one day she will even look back on photos of herself with the trach and be astounded that that was her. She older she gets, the farther away she gets from the medically fragile baby she had been. She is growing up to be a tough, resiliant, determined, smart, and beautiful little girl.

And that is how I want her to think about herself.

Appreciating Typical

We have about a million hours of video footage of the kids, and are finally in the process of transferring the tapes to DVD (so we can actually watch them). Yesterday I put one of the DVDs on. The one that got randomly chosen started when my son, D, was 21 months old and ended a few months after his birthday. His entire 2-year old birthday party is recorded, which reveal a very pregnant Sugar Magnolia (my daughter, A, was born just 2 months after his 2nd birthday). I hadn't seen this since we shot the video, and I, too, was entranced.

It was amazing to see how little D was. At the time, he seemed so grown up, like such a big boy. He was always very precocious, even at that age. We have footage of him, at 21 months old, singing the entire alphabet. He had the Fisher Price Little People A to Z Zoo and was rattling off the names of all 26 animals---even obscure ones like ostrich, nightingale and yak. After the birthday party scene, we have footage of him riding his tricycle for the first time (a gift from my father and step-mother) and although J had to help him a bit, he pretty much understood how to ride it.

The more I watched, the more my emotions changed. First I felt happy reliving these fun moments. Then I felt nostalgic. I don't remember D being this young, and again I felt like time is getting away from me. Suddenly I felt awe. After having A, with all her developmental delays, it absolutely floored me that D knew the alphabet at 21 months and was riding a tricycle at 2. Finally, I felt sad. The things that come so easily to D are so hard for A. When she was 2, she had just started to crawl. Even now, at 4 1/2, she doesn't a trike with half the finesse that D did at age 2.

Since D was my first child, and was either developmentally on time (said his first word before he was one, walked at 13 months) or even early (he was reading at age 3) I thought that's what all kids did. When he was born, he latched on right away and was a champion nurser until I weaned him at 14 months old. He sat through, and understood, his first movie (Curious George) at age 2. I never appreciated how TYPICAL my son is. He hit all his milestones---speech, gross motor, fine motor, feeding, even potty training--when he was "supposed" to.

It never occurred to me that my second child would have so many challenges. Not able to eat and require a feeding tube? Not being able to walk until age 3 1/2? Not passing her hearing test and requiring hearing aids? It wasn't on my radar. But now I celebrate her milestones with a fervor that I never felt with my son. Sure, when D hit his milestones I was the proudest mama ever. I relished every little thing he did--and I still do. But with A, it's different. I don't just relish her accomplishments, I shout from the rooftops! Because everything is so much more difficult for her, what she does means so much more.

Now I know better. I know that typical development is a thing to be cherished and not taken for granted. And trust me---I don't.

My Big Speech!

A few weeks ago I was the guest speaker at A's preschool's annual auction/fundraiser. This fundraiser brings in thousands of dollars for their amazing inclusion program. Every year they have one parent, who has a child with needs, come and talk about their child and how the school has affected them. I was honored to be the speaker this year. There were over 700 people there, and I was nervous. But I think I got my point across...I was able to talk A's amazing journey, as well as tell people what a fantastic thing inclusion is.

Below is my speech. For purposes of anonymity (since my blog is anonymous) I changed some names. But the speech is the same.

My daughter A is now 4 1/2. She has been at ABC since being in Funtastics at age two. When I came to my first auction/fundraiser a few years ago, I knew that one day I, too, would be up here talking. Not because I like public speaking, but because A’s story is worth telling. And I am thrilled to have the opportunity to be able to share with all of you how fabulous I think this preschool is. I want to tell you about A’s journey first, and then tell you how being at ABC has affected her.

I should backtrack by telling you that A has an older brother, D, who is two years older than her. D is a very healthy, typically developing boy. I had no reason to believe that my new baby would be any different. It was a healthy pregnancy, with a healthy ultrasound. A was born by planned c-section at 38 weeks. I went into the surgery thinking that I would give birth to my daughter, spend a few days in the hospital, and be home in a few days.

I’ve heard it said that the moment you find out you have a child with special needs changes your life forever. From that moment on, as with any life-changing event, everything can be categorized as happening before or after finding out. Some people find out their child has challenges while still in-utero, from an ultrasound or amnio. Some people find out as soon as their child is born with an obvious birth defect. Some people don’t find out until a few years later, like when a diagnosis of autism arrives. Still others find out they have a child with special needs much later in life, like if their child is injured in an accident.

I knew something wasn’t right from the moment A was born. The first indication that something wasn't right was that A was born with a cleft lip. This was shocking to me, as we had had an ultrasound and this did not show up. However, she had been in profile during the ultrasound, so I can see why it didn't show. I was in shock, and was devastated. How could my baby girl have a birth defect? I thought it was the worst thing that could have happened. However, I fell in love immediately, and was fiercely protective. This is our first picture together, and you can see the fear in my eyes. I had no idea what was in store for us.

I shortly found out that having a cleft lip is far from the worst thing that can happen. Within 2 days of her birth, A had lost almost a pound, despite the fact that I was desperately trying to nurse her. She was taken to the NICU (neonatal intensive care unit) at the hospital and then transferred to the NICU at Children's Hospital, where she remained for the next 12 weeks. It turned out that she had a vascular ring, which was a blood vessel coming from her heart and was wrapped around her trachea and esophagus. This was affecting her breathing and ability to eat, which led to her severe weight loss. At 10 days old, A had heart surgery to cut that blood vessel...but where the ring was around her trachea was still very floppy; it wasn't rigid like the rest of the cartilage. This led to severe breathing difficulty, as her airway kept collapsing on itself. During the 12 weeks she was hospitalized, we found out about many more birth defects, including but not limited to: a paralyzed vocal chord, severe vision impairment, she was deaf in one ear and hard-of-hearing in the other, and had no semi-circular canals, which are the parts of the inner ear which control balance. We had to insert a feeding tube into her tummy, because with the breathing difficulty she never did get the hang of eating, breathing and swallowing at the same time. Eventually she also got a breathing tube, or tracheostomy, because her breathing issue was so severe. I seriously did not know what her future would hold.

After we discharged from the NICU, we were hooked up with an early intervention program. We had a fabulous teacher, S, who would come to our house once a week to work with A, teaching her developmental tasks. When A was about 2, S asked us if we were interested in the Funtastics Program at ABC. She told us it was a program for 2 year olds, that even though I would have to remain on campus because of her tracheostomy, it was a drop-off program, and that it would be great for A. I jumped at the chance, since for the previous 2 years all of A's outings consisted of doctor's appointments, therapy sessions, and shuttling my son D to his activities. She was in class with B, and L and with early intervention teachers M and M. It was amazing to see her in a school environment, doing art projects and playing on the playground.

Soon it was time to decide where to put A for preschool. I had 3 choices. Choice #1 was ABC of course. Choice #2 was the special needs preschool run through the local school district; and Choice #3 was the preschool where my son had attended. I really didn't want the special needs preschool; cognitively A was right where she should be, and I didn't think it would be an appropriate placement. I just knew that A would rise to meet any challenge, and felt that a special needs preschool wouldn’t provide the kind of challenge I was looking for. I’d always dreamed that she would attend the preschool where my son went, which was through our synagogue. It was a great school, offering a good curriculum and a Jewish education, which was important to me, being Jewish. But when I talked to the preschool director, she was very wary. She was concerned about having A there. She wasn't walking yet, only crawling, and the director was concerned that she would get run over on the playground. She voiced concern about this, and concern about that. I knew about the inclusion program here at ABC, and the director told me that they wanted A. They WANTED her! It was music to my ears. But what really put me over the edge in my decision making process was something that one of her early intervention teachers told me. She said that the child doesn’t need to be ready for the school; the school needs to be ready for the child. My synagogue was in no way able to cope with a child who wasn't walking and had a speech delay, but ABC was. My decision was made.

A was in the 3 year old class last year with H, D and M. And this year she is in the 4 year old class with J, S and N. I wanted to make sure to mention each teacher by name, because each has had a huge impact on A’s life.

To update you, A started walking this past January, at the age of 3 ½. This summer she got both her feeding tube and breathing tube removed. Her speech has blossomed. She is learning to go down a slide without falling over. She is starting to write letters of the alphabet. She is a social butterfly. All in all, the grim future I envisioned for my daughter has not come to pass. She has exceeded all my (and the doctor’s) expectations. She is a true miracle child.

So that brings me to the question of what does being in an inclusion program mean for my daughter? For one thing, it's been great socialization. The kids just love her. When we walk in in the morning, the other kids often shout “A's here!”. They love to play with her, and she loves to play with them. You have to understand that before A started school she rarely played with kids her age, partly because we'd been so busy with therapy and doctor's appointments but also because of the typical “second child syndrome” where the first kid gets more!

Secondly, she gets the role modeling of typically developing kids. Her speech has vastly improved since being in the school. She has been asking to go potty (even though she isn't potty trained yet) because she sees her peers going potty. Just last week S showed me some letters she wrote after watching her peers practicing writing their letters. Without typically developing kids to model, I am convinced that some of these gross motor, fine motor, speech, and self-help skills would have been slower to develop. She drinks out of a sippy cup normally, but now drinks out of an open cup after watching her classmates do so at snack time. My child, who never ate and was on a feeding tube for a few years, is now in a lunch program at school.

Third, because it is an inclusion program, and there are kids here of all sorts of abilities, the kids don't look at A as being different. Yes, in previous years she had a breathing tube in her throat, crawled instead of walked, and was virtually unintelligible. Even now she will always have hearing aids and glasses. But I don't think the other kids even notice that. There are kids here in wheelchairs, with glasses, with Down Syndrome and autism. What a great lesson for kids of all kinds, that we should look beyond what people look like. I would like to think that all kids who come through this school are raised to be more tolerant, and grow up to be more tolerant and accepting adults.

Fourth, not only do I feel a huge level of acceptance for A, but I feel a level of acceptance. The other moms here, not just in her class but in the school, don’t shoot me looks of pity like I get at other places. The moms here get it; either they themselves have kids who have needs, or they don’t have children with special needs but know that this is such an accepting environment.

Finally, last but not least, being here in the inclusion program gives me a sense of normalcy. Yes, A has hearing aids, 8 hours of therapy a week and a list of doctors a mile long. At least she no longer has a breathing tube and feeding tube! But now, thanks to ABC she also has birthday parties, playdates, field trips, artwork on the fridge, paint splattered clothes, stories to tell and songs to sing. It’s all I ever wanted for her; to do what other kids her age are doing.

I cannot speak highly enough about the staff here at ABC. They all seem to honestly care about A. But it’s not just A---it’s every child here, whether or not they have special needs of some sort. Typically-developing or not, the teachers embrace each child who walks through these doors. From my observation over the past 2 ½ years, they don’t give any child special treatment. They encourage each child to be the best he or should could be. I’ve seen that first hand with A. I am convinced that she wouldn’t be flourishing the way she is today if she weren’t here. It’s been such a blessing, and I’m thrilled that I got the opportunity to share with you all tonight.